1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
The Mighty Egg: New Life Springs Forth Despite ME/CFS
Jody Smith finds that even with ME/CFS, new life as symbolized by the mighty egg, can still spring forth ...
Discuss the article on the Forums.

CBT/GET potentially harmful to ME/CFS patients

Discussion in 'Latest ME/CFS Research' started by _Kim_, Nov 3, 2009.

  1. Dolphin

    Dolphin Senior Member

    Messages:
    6,404
    Likes:
    4,534
    Thanks for that, Mithriel.

    I think I will try to restrain myself from posting more on this thread.
  2. Dolphin

    Dolphin Senior Member

    Messages:
    6,404
    Likes:
    4,534
    (Just thought I'd finish it off before trying to leave this thread).

    Thanks fresh_eyes.

    I have started a new thread:
    http://forums.aboutmecfs.org/showthread.php?t=1757

    The guidelines are very much in use. And unlike a lot of guidelines in a lot of countries, NICE guidelines have a lot of power. That means that Barts'/Peter White's influence on the final guidelines would affect people around England. Bill Reeves has praised them and generally they can also influence the care of ME/CFS patients in other countries also.
  3. Esther12

    Esther12 Senior Member

    Messages:
    5,068
    Likes:
    4,776
    So you felt that implying my every post was part of a devious deception to mislead and manipulate people was restrained? And me pointing out that this is a slightly crazy thing to think was an unwarranted attack? You seem to have a rather one-sided understanding of rudeness.

    Feel free to quote-mine if you want, I don't think it reflects badly upon me.

    re the NICE guidelines - the Bart's comments clearly come at things from a very psycho-social viewpoint. The versions of this model Ive seen have all read like quackery, but I also think it's rather hard to provide a thorough criticism of their comments as they never lay out their understanding of CFS, and mention studies and research without providing the specifics of the paper's they are talking about. As I keep saying, the trouble with discussions about CBT, GET and CFS is that all three can have different meanings to different people. It's easy to misinterpret brief comments and make misplaced criticisms. There are a number of studies which show CBT and GET to be useful for CFS. Of the ones I've bothered to look through there always seem to be problems with their methodology, or it's only based on a really small sample, or they ignore drop outs, etc.... but as I'm unable to look at the sources Bart's refer to, I cannot be sure that is the case for those. I also worry that my own biases lead me to be more critical of papers supportive of CBT and GET than I would be of papers supportive of some pharmacological intervention. Conversely, I worry that the biases to be found in the medical profession serve to mislead their interpretations of the available evidence, and make them unduly supportive of psycho-social explanations. Either several leading members of the psychological lobby are severely deluded, or many CFS patients are. Currently I think it's more likely to be the psychiatrists, but I recognise I'm not an impartial observer here and could be misleading myself. I also think its possible that the psycho-social model of CFS is rubbish, but some version of CBT and GET could be of use (maybe through inducing neurological changes, maybe it would link in to the amygdale retraining some find useful) and Im unduly dismissive of them because they were born out of understandings of CFS I think are just quackery. There are numerous other possible scenarios I could go on typing all night. That some people here seem to think that just recognising these as possibilities is an attack on them as an individual is a dangerous misunderstanding. I dont know what causes CFS, and Im pretty sceptical of those who claim that they do, but Im still open to any possibility if strong enough evidence pops up to support it.
  4. Dolphin

    Dolphin Senior Member

    Messages:
    6,404
    Likes:
    4,534
    You are using a different use of the word restrained I believe.

    Perhaps I would have been clearer if I had said "I restrained myself from posting the specific information".

    I didn't say it was an unwarranted attack. I said that was the reason why I posted the information.

    I think we could leave it there.
  5. Mark

    Mark Acting CEO

    Messages:
    4,447
    Likes:
    1,813
    Sofa, UK
    Together

    I hope we're moving towards a way of dealing with these sort of disputes. I'm sure the new forum guidelines will be a big step forward. For some reason, I myself have ended up taking an interest in some of these arguments. I think it's because I always find it so easy to see both sides, to see where both people are coming from, and to see that they are both PWCs trying to do something valid (but different). So it's hard for me to watch friends falling out over misunderstandings when they both basically agree. We won't get anywhere until we get over this sort of thing.

    So here's my analysis. On one side you have seasoned campaigners, radicals and veterans of the CFS scene, who are well-informed, fully up to speed on all the arguments, and with a clear set of political agendas to push. These people are wonderful and have done great things, and they have very strong points of view.

    And on the other side, there are now a whole load of us newbies. I've never posted on any forum before the news of XMRV broke. I've spent time searching for information, trawling the internet, reading whatever I could find - and then I've stopped and given up and concentrated on my real life instead because I was getting nowhere and my energy was limited. I've found out enough in the past to be aware of Wessely and be happy to call him Weasley on the basis of what I've read, but I've never heard of White until the last couple of weeks. I've looked for CFS campaigning organisations, but always been disillusioned with what I've found because none of them seemed to be taking a tough enough stance for my liking. So: I'm articulate and I have 15 years of experience thinking and reading about the issues, but I'm out of the loop on a lot of things. I need to express my "internal musings", I need to talk through and think through the politics I didn't even know existed, and I need to discuss the issues with other PWCs.

    So these two groups meet up, and sadly, sometimes, all that results is a big misunderstanding and a blazing row. "How is it possible you've never heard of White?". It's very, very easy. Most ordinary people have no interest whatsoever in all this stuff, and have other interests they would rather pursue. I personally know 3 other people with CFS, and I'm pretty sure none of them have heard of Wessely. They have hardly even bothered with the NHS after their early experiences; I doubt they're even registered in that 250,000 in the UK. We pursue alternative treatments. Personally I've been conscious for a long time of the CFS stigma, the irrationality of the diagnosis criteria, and of the psychological treatment, and I've studiously avoided going through the NHS route to CBT. I never even went there. All tribute to those of you who've been banging your head against the brick wall for a couple of decades; I'd had enough of political campaigning against a wall of silence before I even got ill, and it never seemed to me to be a practical use of my limited energy. XMRV has changed that: there is something to use now, there's a basis for people to start listening to us. That's why I turned up out of the blue, along with a whole load of others.

    Call it the XMRV effect. There are, I'm sure, thousands more like me who are poised to appear as if from nowhere. The invisible illness begins to show its face. Many of us have never posted before, some of our experiences might be quite different, you seasoned pros might be wondering where on earth we're coming from and how it's possible we've never even heard of the Oxford Criteria. So you wonder: can these people really have CFS? Well, I suppose us newbies could find a way to wonder the same thing about you: how on earth did these people find the time and energy to campaign and post online if they have CFS? I never considered the question before. It just seems like a really nasty accusation, and from my perspective, every single time I've seen it mentioned, yes quite frankly it does lead me to wonder about the poster's state of mind and their grasp on reality. Quite reasonably so, because it is always blatantly ridiculous. I'm sorry, but it is. Yet there's a pattern here: a number of really excellent campaigners are doing it, so I can only guess at the most charitable explanation: you must have been subject to some kind of infiltration in the past and you're very wary of it now.

    So here's the problem that needs dealing with: how to accommodate people like me, who want to debate and decide (for example) whether Wessely is a severely misguided philanthropist or a monster; and also the seasoned campaigners, who want to carry on organising, analysing and discussing with like-minded experienced campaigners? How can we find a place for both?

    I can only guess that the answer lies in organising and suggesting separate threads with specific agendas, just as Mithriel has suggested. Define a thread as being only for people who have "followed all the literature and know what they are talking about" if you like. I think that might be a useful separation, to allow another space for people who haven't followed the literature and just want to find out more. Alternatively, provide some well-presented summary materials on the necessary background and when people come in who are ill-informed, just refer us there. Ah, but here's the rub: does this well-presented summary of the issues exist? I've been referred to a few things, some of them interesting, but frankly I've not seen anything yet that cuts the mustard in terms of summarising the main predominant views of this forum in an intelligent and reasoned way. It's a bit hard to find such things from a bit of vague googling, so maybe it does exist, but I've not seen it linked to from this forum yet. Actually, that's where I'm hoping that this dialectic of confrontation between newbies and campaigners might lead us. I'd like to see all this wonderful and strong material gathered together, organised, and put through the fire of some genuine criticism, so that it can stand up to scrutiny. That's something us newbies can contribute, I hope: fresh perspectives from PWCs who are on side, but need the information well-presented and rigorous.

    If this influx of ill-informed timewasters is significant now, just wait until we hit the news for real! There are millions of us. Millions. How many more members could this forum start to attract? We're going to need some good organisation and some new rules if this place is going to preserve the extraordinary quality of the discussion, the wonderful friendly atmosphere, and at the same time reach out to an army of PWCs hungry for information.

    To sum up, I have to direct my suggestion to the seasoned campaigners. This is the moment you have been waiting for, for years, even decades. You have an army of new recruits arriving: hungry for information, armed with unexpected skills, expertise and contacts, filled with rage after decades of neglect, and poised ready to join your movement. Don't blow it all by questioning our credentials or getting shirty with us for not being up to date on the politics. I think some cliches apply - about the people united; about how, divided, we fall; about what will happen when the broken-hearted people agree. So just everybody please remember your history lessons, think back, choose your favourite slogan, and realise that all this stuff about Unity wasn't just handed down to us from nowhere. It's simply the only way we can achieve anything significant: Together.
  6. Alice Band

    Alice Band PWME - ME by Ramsay

    Messages:
    175
    Likes:
    0
    UK
    Mark,

    Could you start another thread maybe and put your great post there?

    (but if you can split it up into spaces so we can read it better)

    I think that your analysis is very good. What you maybe didn't give enough weighting to is the problem of trolls and mind games on the CFS forums.

    In the past yes, we have been infiltrated. We have had quotes from the groups taken out and used publicly against us, lost email addresses due to bogus complaints or had legal threats made against us or been the victim of hate campaigns. It's happened to me.

    Although I have no intention to accusing anyone here (and I am only saying this in relation to your email), there has been a problem with trolls claiming to be new people with ME (but with strange "very familiar" use of language) on every group I have joined. Sadly, the ME & CFS groups seem to attract trolls.

    They always start on the same topics, ask the same questions pretending to be a newby but when their questions are answered it is never "enough".

    On some forums actual questions are discouraged or banned because of the trolls. The questions have all been long answered but they are so favoured by trolls that it is just easier to ban the topic and then for the Mods to watch for their next attempt.

    There needs to be more awareness when someone new joins that they are acting in a suspicious way. There is a difference between opinions and baiting. I've seen baiting over and over again - recognise the signs. Also naivety in addressing it.

    It usually occurs when CBT, the psych lobby or mental illness is discussed.
  7. Orla

    Orla Senior Member

    Messages:
    446
    Likes:
    36
    re psycho-social views

    Hi Esther,

    You wrote:

    <re the NICE guidelines - the Bart's comments clearly come at things from a very psycho-social viewpoint.>

    Yep.

    <The versions of this model I’ve seen have all read like quackery, but I also think it's rather hard to provide a thorough criticism of their comments as they never lay out their understanding of CFS>

    If you read more of their papers and other comments by them they are usually quite clear what their views are. They are often more obscure in what they say/write for patients as they want to get the patients on board and basically trick them into accepting their ideas. But the stuff they write for doctors etc. is much clearer.

    I think, though, that they have become more tricky over the years, possibly knowing that patients are now seeing a lot of what they write (e.g. in medical journals) so some of the earlier stuff is more interesting as they are generally more brutally blunt in the stuff from the early 1990's. They say the same thing now but in more "polite" language, generally.

    I wrote out something for a group on the psychiatric view of ME and might post it somewhere on this site, but don't know if it is too long. There are some interesting quotes here from other authors (covering biomedical and psychiatric views) http://www.meactionuk.org.uk/Organic_evidence_for_Gibson_Large_Print.html

    I think part of the problem here is that you mentioned that you had not read much on the psychiatric view of ME/CFS. If you had you might understand better the critiques or where people are coming from. So a comment that might not sound that bad on it's own, or might sound like it could be open to interpretation, becomes much clearer if the person knows other things the person/their team/colleagues have written, or things they have done (e.g. exclude biomedical researchers from conferences, exclude patient representatives from panels, and the like).

    A lot of us are on other lists so also hear from patients of some of these people, or patient groups in their areas, so also have other knowledge of their activities. This would then inform our views.

    <As I keep saying, the trouble with discussions about CBT, GET and CFS is that all three can have different meanings to different people>

    That is true up to a point, but GET basically means graded exercise, and anything else is something else. CBT is for behavioural and mental health problems, basically to try to stop abnormal/irrational beliefs and behaviours. It was originally advocated by Wessely and co for ME, as they thought our whole illness was a concotion of irrational beliefs and behaviours. Peter White and co subscibe to this view. (also Sharpe and people like Alice Weardon, Trudie Chalder and so on).

    However, more recently others who do not hold these extreme views talk about CBT for ME/CFS, but some of what they are talking about is more like self-help and not CBT (the Canadian Overview document mentions this conundrum and advocates calling this something like self-help rather than CBT), and definitely not CBT the way it was originally advocated for ME. Originally CBT was to try to get patients to stop thinking they were sick, and to do more and then they would be better.

    So if someone does counselling/CBT/self-help that encourages them to Pace, this is the opposite of CBT to convince them they are not sick and need to ignore their symptoms and do more.

    Orla
  8. _Kim_

    _Kim_ Guest

    Hi Orla

    What a beautiful contribution as your first post here. I'd like to hear more from you.

    Welcome to the forums.
  9. Dolphin

    Dolphin Senior Member

    Messages:
    6,404
    Likes:
    4,534
    Seems to make more sense all right.
  10. Orla

    Orla Senior Member

    Messages:
    446
    Likes:
    36
    Just a few psychiatric quotes to give people a flavour of what they think, my emphasis:

    From Wessely:

    "I'm going to talk not about an illness, but about an idea" "I will argue that ME is simply a belief, the belief that one has an illness called ME", from Simon Wessely's talk entitled Microbes, Mental Ilness, The Media and ME: The Construction of disease, at the Eliot Slater Memorial Lecture, 1994.

    "It seems that ME sufferers prefer to feel that they have a 'real' disease - it is better for their self-esteem" Wessely at a talk in Belfast on April 15th, 1992

    “CFS is dogged by unhelpful and inaccurate illness beliefs, reinforced by much ill-informed media coverage; they include fears and beliefs that CFS is caused by a persistent virus infection or immune disorder

    Michael Sharpe (and co.):

    “It does seem that the neglect of the psychological impact can be harmful, for example, by suggesting to the patients that they are sick when they are not”

    "The use of extensive laboratory investigation may be psychologically harmful to the patient by reinforcing their beliefs about serious physical disease" Michael Sharpe in British Medical Bulletin, 1991: 47:4:989-1005.

    “Evidence for the superiority of new ways of thinking about and managing such patients is growing. These new treatments, often referred to as cognitive behavioural therapies, take a new approach (which) is in keeping with the evidence that the perpetuation of unexplained somatic symptoms is best understood in terms of psychological factors (such as) misinterpretation of bodily sensations and unhelpful coping behaviour.”

    [i.e. Orla - we don't have symptoms, we just misintepret normal bodily sensations!]

    “The clinical problem we address is the assessment and management of the patient with a belief that he / she has a fatiguing illness such as CFS"

    "Referral to ‘specialists’ should be avoided as they can entrench illness behaviour"

    "The tendency to interpret symptoms in terms of physical disease rather than emotion is potentially of clinical importance as it has been shown to predict a poor outcome”

    Sharpe on why they advocate CBT (and basically GET)

    "The first application of CBT to chronic fatigue syndrome was by Wessely and colleagues (who proposed) a vicious-circle model of the perpetuation of chronic fatigue whereby patients' beliefs about the illness lead to avoidance of activity and this to chronic disability..CBT helps patients re-evaluate their beliefs (and) encourages them to change their behaviour..Change in belief is an important factor in recovery" Michael Sharpe 1998.
  11. gracenote

    gracenote All shall be well . . .

    Messages:
    1,508
    Likes:
    42
    Santa Rosa, CA
    thank you Orla

    Orla, thank you so much for this. Welcome. And please continue to post.
  12. Alice Band

    Alice Band PWME - ME by Ramsay

    Messages:
    175
    Likes:
    0
    UK
    Orla,

    The quotes that you have supplied read like a recording from the majority of my UK health appointments during the last 19 years.

    I've been ill with ME for much longer but before CBT&GET became fashionable I was treated with respect and what medical care was available then.

    In particular those quotes accurately reflect how CBT was applied to me and how GET was explained. This was as a person with ME.
  13. fresh_eyes

    fresh_eyes happy to be here

    Messages:
    900
    Likes:
    4
    mountains of north carolina
    Orla and Alice Band, I'm dumbfounded. It's just...I can't grasp how horrifying that all is. Glad you're here.
  14. Mark

    Mark Acting CEO

    Messages:
    4,447
    Likes:
    1,813
    Sofa, UK
    Sure, I'd be happy to move it. At the time I posted, it followed on from the existing discussion, but things have moved on of course. I wondered about posting it somewhere else, just wasn't sure where. I'm afraid I can't think of a title + location for the thread yet - suggestions welcome - and I'm quitting now and going to be very busy the rest of this week, so I might not have time to get to this for a few days. Quite happy for somebody else to move it, format it etc, if you think it's worthwhile. It is a separate discussion, certainly.

    Thanks very much for confirming there's been a history of such things. I had no idea about all that, I was just guessing based on what I've seen. What seemed like oversensitivity on the part of some of the most experienced posters was really baffling me.

    I'm still not quite sure what to make of what I've witnessed lately, but I can at least see that there's been a genuine historical problem behind it all. I still find it hard to believe that any of the recent examples I've seen cited really are not who they claim to be. It just doesn't ring true to me, it would have to be such extreme and bizarre behaviour. And in two cases at least, I feel quite sure people have been unfairly accused. I do think there's a considerable risk of being primed to expect this sort of thing and jumping the gun. Ironically, a bit like one of the many problems with the psych theory of CFS: once you put the doubt out there, it can become a self-fulfilling prophecy: you see what you expect to see and people start to behave as you expect them to behave. So it still looks to me as though there's a real danger of treating people unfairly based on an incorrect assumption. What a horrible business. But thanks very much for explaining some of the background. I hope I'm more aware of it now, but I still think it needs a more subtle response to deal with it; perhaps we'll get to discussing ideas on that on the new thread.[/quote]
  15. Mark

    Mark Acting CEO

    Messages:
    4,447
    Likes:
    1,813
    Sofa, UK
    Thanks ever so much from me too for the list of psych quotes, Orla. Brilliant, it really exposes what they have actually been saying all along. Incredibly, I've not managed until now to pin down anyone actually saying all that stuff so explicitly, I've just had to interpret it myself from what has been claimed. It's always been presented to me with a sugar-coated pill that I instinctively know not to trust, but nobody ever owns up to what lies underneath it all. I'm sure it's all been out there if I'd known where to look, but I didn't.

    From discussions with family and friends, just a few choice quotes like these would be enough to convert loads of people I know to angry opposition to these guys. I know loads of ordinary people with no special axe to grind who would be deeply angered by this history, and by quotes like these, if they saw them. I've seen faces darken, especially post-XMRV, when I've showed lesser evidence than this. There's a very receptive audience out there for this message, if only we can get the word out in the right way.

    While you mention that, can anybody tell me about Pace? A friend of mine has been offered this on the NHS and I don't know what to say about it. It sounded like a new kind of window-dressing for CBT/GET, and by now I just instinctively distrust anything that comes from the medical authorities on CFS - look what they've done! - but I've read more positive things about Pace here, even Nancy Klimas is recommending 5 mins on 5 mins off which I would have thought sounded like a bad idea. Should I consider a Pace programme to be OK for my friend? My instinct is against it. (And by the way, my reading of the earlier argument was that Esther was just asking the same question with perhaps the wrong terminology: whether a more modern, nuanced Pace approach is suspect or not).
  16. Mithriel

    Mithriel Senior Member

    Messages:
    563
    Likes:
    36
    Scotland
    When the NHS talks about "pacing" they actually mean grading exercise but taking the patients ability into account, rather than the graded exercise idea where the patient had to ignore any pain or distress.

    I think the clinics have found that GET just doesn't work! They sometimes call it adaptive pacing.

    From many posts I have read on forums, it seems to start well because patients are told to cut down on what they do - so they feel much better, but then the expected improvements and increase in ability doesn't happen and patients are accused of not trying hard enough.

    The experience has been distressing for many of them but it may work for others we don't hear about.

    Pacing was the word people used for stopping doing things and resting when they felt bad so that they avoided crashes. The weasels have taken it over and changed the meaning.

    They are running a very expensive trial of their form of pacing which is due out soon. It will say that it works wonderfully because it has been set up to do so. People with fibromyalgia - which is known to respond to gentle exercise - were included to "increase uptake" of subjects for the study :confused:

    "Let's study diabetes but if we don't have enough people we'll include patients with back pain as well! "

    They have also decided to use actimeters at the beginning to show how little patients move but at the end of the trial recovery will be measured solely by a questionnaire because "actimeters are uncomfortable to wear". Of course it can have nothing to do with the fact that all studies which have used actimeters for outcomes have shown patients feel better but are actually doing less. The improvement is because they are now doing things they enjoy.

    I have no problem with passing on information to people who are new to CFS but, like many others here, I am very limited in energy and the time I can spend on the computer so continual demands for more proof and harping on about the same things becomes tiresome.

    It is very difficult to be concise about what has happened between ME CFS and the biopsychosocial school. They have had twenty five years of spin, sleight off hand and economy with the truth.

    I just don't know how they have got away with it. You feel that common sense, the science that exists, the evidence of their double speaking, the simple fact that people are not getting better, would make it clear how wrong they are, but it just doesn't happen.

    Mithriel
  17. Esther12

    Esther12 Senior Member

    Messages:
    5,068
    Likes:
    4,776
    Hi Orla.

    I’ve really not read anywhere near enough of the work of the psychiatric lobby to provide a proper refutation of their claims, and that which I have read has been in a casual manner rather than part of a serious parsing; but I am aware, and have mentioned, that members of the psychiatric lobby have significantly changed the way they present their theories on CFS in recent years, and that I'm unsure as to what extent this should be seen as a dishonest attempt to hide their own quackery, and to what extent it should be seen as a genuine evolution in their understanding.

    This links into a side issue I'm deeply unsure of, but would be interested to hear the thoughts of others: what are the limits of legitimate science? Science progresses by making mistakes, the proposal and refutation of often highly theoretical ideas, and the accrual of new evidence. The scientific and medical racism of the nineteenth and twentieth century is now widely dismissed as fundamentally unscientific and a distortion of science in a way that other abandoned theories are not, and I’m not entirely sure why. I expect there is a sense that scientists have a greater responsibility to caution and scepticism when proposing theories which will affect other human beings, rather than just quarks or gravitational fields, but I’ve never really seen any sensible guidelines laid out by a scientist or philosopher.

    At what points to the claims made by researchers so undermine their own credibility that they and their work should be seen as not just flawed, but fundamentally outside of science? I think some of the claims made by the psychological lobby can be seen as equivalent to the scientific and medical racism of earlier times, yet their work continues and they continue to be respected within their fields. It’s possible that in the future they may develop a useful understanding and treatment for CFS – but how could patients ever trust that this is the case? I’ve seen ‘falsifiability’ mentioned, but this is a difficult concept to define, and while the theories proposed by the psychiatric lobby often seem to intentionally avoid making falsifiable claims, they are still falsifiable. If the XMRV research provides a clear viral explanation, and patients respond to treatment, the psycho-social model of CFS would have been shown (in most people’s eyes) to be false. It would be easy to go on talking about this, but I’ll stop here and see what others have to say.

    “So a comment that might not sound that bad on it's own, or might sound like it could be open to interpretation, becomes much clearer if the person knows other things the person/their team/colleagues have written, or things they have done “

    As an aside, while I think you’re quite right that someone’s past statement can be used to develop an understanding of their true meaning for later ambiguous ones – there is a danger that this can make us seem paranoid an unreasonable. Let’s continue the comparison with racism. African-Americans would, and still do, talk about right-wing politicians talking in codes: ‘inner city crime’, ‘single mothers’ etc would be seen as holding racist connotations. I expect that they were often right, but I don’t think such an approach helped their cause – it allowed a lot of white Americans to dismiss them as angry and irrelevant. People don’t like injustice so they have a tendency to believe it does not occur; they also have a tendency to dismiss the views of those seen as ‘weak’ and venerate the views of those claiming to be ‘experts’ – we’re fighting against people’s cognitive biases here, and to do so, need to be cautious. When criticising the ideas of others, I think it is best to try to attack the most generous interpretation of their words possible, as otherwise it will appear to others that your criticism is unjust. It’s certainly still fair to point to their past statements as well, but this should always be explicit, rather than part of the foundations of our discourse.

    That’s one of the problem with things like the quotes you posted (were they from ‘Quotable quotes’? If so, I read that recently). Regardless of context many of them seem like undeniable quackery to me, but if we were to send them to a journalist or academic, I don’t think they’d be interested. Out of context quotes can still have their uses, but when challenging entrenched authorities a lot of people will give them the benefit of the doubt. (I’ve also had trouble tracking down original sources for the quotes I tried – are these from documents unavailable on line? Are we sure they’re all kosher? – Others may just assume we made them up.)

    Because this is a forum for people with CFS, many of whom will have shared experiences, I worry that it could encourage a mode of expression which will make it more difficult for us to communicate and convince ‘outsiders’ of our ideas and concerns. CFS patients are pretty widely dismissed by the medical community as ‘militant’ (another good comparison with African American civil rights?), and I think this could be changed if we took a more cautious and self-critical approach to the presentation of our ideas. (I think it's good to be cautious and self-critical anyway!)

    I don't want to act like I've got some beautifully crafted, academically respectable book ready to roll, or that I'm not grateful for those who have put the work into compiling damaging quotes from Wesseley etc, but I do think it's worth recognising the limits of this approach, and that we can become influenced by our own cognitive biases in a way that can lead others to dismiss our viewpoints.
  18. Robin

    Robin Guest

    I understand what you're saying. But there's no real way to counteract the Wessely school unless good science supersedes them (like the XMRV studies.) If patients are summarily dismissed as not knowing the difference between physical and psychogenic symptoms and victims of mass hysteria, I don't believe that finding a Martin Luther King tone will validate our viewpoints. It reminds me of Soviet Russia. Physicians and scientists are fair game too. The infamous blog post on Science Based Medicine (usually a very good site) pretty much called Dr. Peterson an enabler. The reputation of CFS is beyond salvage at this point (with the exception impregnable research.)

    It might be useful to have a sticky where people can document (with no discussion) some of the primary source work of the Wessely school that's been cited, and accounts of those who have been involved in clinics and trials. Then new patients or curious people such as yourself can evaluate it firsthand? Perhaps that would end some of the more personal arguments that have popped up about CBT/GET.

    Anyone think that's a good idea? Pros and cons?
  19. Orla

    Orla Senior Member

    Messages:
    446
    Likes:
    36
    I have put this in 3 parts.

    Hi Esther and all,

    <I’ve really not read anywhere near enough of the work of the psychiatric lobby to provide a proper refutation of their claims>

    You could go and do that then. You obviously have time and energy for it.

    <I am aware, and have mentioned, that members of the psychiatric lobby have significantly changed the way they present their theories on CFS in recent years,>

    How could you be aware if you had not read their work? Personally I try not to have an opinion on something without studying it first, and would not comment on something like the development of someone's ideas over time, or a nuance which is harder to pick up on, without reading what they wrote.

    <I'm unsure as to what extent this should be seen as a dishonest attempt to hide their own quackery, and to what extent it should be seen as a genuine evolution in their understanding.>

    If you had read it you would know that there is no real difference in what they thought then and what they think now. There is no difference in what they advocate for patients in terms of treatment/management, they still don't want patients to get testing, they still don't want money/attention diverted to (non-psychiatric) biomedical research, they still don't want drugs for patients (other than some of them wanting psychiatric drugs) and so on.

    <This links into a side issue I'm deeply unsure of, but would be interested to hear the thoughts of others: what are the limits of legitimate science? Science progresses by making mistakes, the proposal and refutation of often highly theoretical ideas, and the accrual of new evidence. The scientific and medical racism of the nineteenth and twentieth century is now widely dismissed as fundamentally unscientific are not, and I’m not entirely sure why. >

    Because they were nonsense. Also they were more political ideas rather than scientific ones, and not every scientist bought into it.

    <I expect there is a sense that scientists have a greater responsibility to caution and scepticism when proposing theories which will affect other human beings, rather than just quarks or gravitational fields>

    Not necessarily. There are other things involved here rather than just individual intellectual pursuit: e.g. funding issues, predominance of a particular theory in a particular department, hospital etc. and so on. Scientists don't live in a vacuum, and to some extent some of their thinking will be influenced by other things around them, both directly relating to their work and in the world around them.

    <At what points to the claims made by researchers so undermine their own credibility that they and their work should be seen as not just flawed, but fundamentally outside of science? I think some of the claims made by the psychological lobby can be seen as equivalent to the scientific and medical racism of earlier times, yet their work continues and they continue to be respected within their fields.>

    Because they have power, money and influence, so it becomes a self-perpetuating cycle.

    <It’s possible that in the future they may develop a useful understanding and treatment for CFS – but how could patients ever trust that this is the case?>

    The only useful theory they could develop is if they dump what they think now and start accepting that this is a biomedical disease like MS or AIDS. Personally I'm not happy to wait around until they are dead for them to wake up to reality (if you can do that when you are dead!).

    <I’ve seen ‘falsifiability’ mentioned, but this is a difficult concept to define>

    Not really, you have a hypothesis, test it, and it is either true or false.

    <and while the theories proposed by the psychiatric lobby often seem to intentionally avoid making falsifiable claims, they are still falsifiable.>

    Some are and some aren't. They argued that ME was a type of depression, that was disproved, of course then they made out it was atypical depression! So they just moved the goal-posts.

    Even when it was obvious it was not depression it did not stop them from putting this into the mind of the reader.

    Also hysteria cannot be disproved, which is basically what many of them argue we have. As someone once said, "How do you prove you are not a witch?".

    Of course if the psychiatrists would stop arguing for no advanced testing to be done, patients might get tests to prove that they have a physical illness.

    < If the XMRV research provides a clear viral explanation, and patients respond to treatment, the psycho-social model of CFS would have been shown (in most people’s eyes) to be false.>

    Patients have already benefited from biomedical treatments but this doesn't stop the psychiatric lobby from pushing their own views.
    Sharpe has written

    “Even if shown to be beneficial, such (immunological) treatment is unlikely to be feasible on a wide scale because of cost."

    Psychiatric management of Post Viral Fatigue Syndrome M Sharpe, British Medical Bulletin 1991:47:4:989-1005

    And yes, that was a while ago, but I see no evidence that Sharpe has become any less aggressive in his attitude.

    Orla
  20. Orla

    Orla Senior Member

    Messages:
    446
    Likes:
    36
    Part 2

    <African-Americans would, and still do, talk about right-wing politicians talking in codes: inner city crime, single mothers etc would be seen as holding racist connotations. I expect that they were often right, but I dont think such an approach helped their cause it allowed a lot of white Americans to dismiss them as angry and irrelevant.>

    The African-Americans are correct, and ignoring the issue would not make it go away for them. I don't think anyone should be surprised if someone with a vested interest in the status quo, dismisses them, any more than we should be surprised if Wessely and co are dismissive of us.

    < People dont like injustice so they have a tendency to believe it does not occur they also have a tendency to dismiss the views of those seen as weak and venerate the views of those claiming to be experts>

    Well that is oppression for you.

    < were fighting against peoples cognitive biases here, and to do so, need to be cautious.>

    It is not just about thinking, it is about people's positions and interests, media propaganda etc.

    <When criticising the ideas of others, I think it is best to try to attack the most generous interpretation of their words possible>

    If generous means twisting their words to the point of misrepresenting them, then I would not agree with that. It should be the most likely and rational interpretation of their words.

    Personally if writing to a media outlet or the like I would not use a weak argument/quote, there is no need. There is so much crap written about us that there is no need to rely on something that someone might try to wriggle out of.

    > Its certainly still fair to point to their past statements as well, but this should always be explicit, rather than part of the foundations of our discourse.>

    Why? They have not altered their views or withdrawn their earlier statements (for me at this point, anything short of "Sorry, everything I said before was complete and utter nonsense, and I should be jailed for the suffering I have inflicted" won't cut it).

    Obviously I tend to use more recent quotes in certain circumstances, last night I just had some of that stuff on the computer handy so just used them. Also some of those quotes are more recent. When I have time I will put in the references properly. My idea was that people would read them and go to the link I posted and see for themselves, where most of those are. They seem even worse when read in more context.

    <Thats one of the problem with things like the quotes you posted>

    They were for the people who wanted concrete information about what these psychiatrists think and say. I'm not really interested in abstract thought divorced from real-world concerns. Most of those were from Quotable Quotes.

    <Regardless of context many of them seem like undeniable quackery to me, but if we were to send them to a journalist or academic, I dont think theyd be interested.>

    It depends whether they have any intellectual curiosity or not, or interest in the subject matter.

    <Out of context quotes can still have their uses, but when challenging entrenched authorities a lot of people will give them the benefit of the doubt.>

    I think a quote only counts as out of context if it someone misrepresents the authors views. Those quotes speak for themselves, and I have read some of the full works where they come from.

    < (Ive also had trouble tracking down original sources for the quotes I tried

    I cannot imagine why, I provided the link to where you could get the sources.

    < are these from documents unavailable on line?>

    Some full things are, some full things are not, though sometimes abstracts are

    <Are we sure theyre all kosher? Others may just assume we made them up.)>

    If you find any of them are false, feel free to let us know. If someone feels they are made up they should go and do the work to show it.

    Orla

See more popular forum discussions.

Share This Page